Thursday, October 4, 2018

Out of the frying pan, into the fire?

Dear G-d, what is it you need from me to do that I am not doing? I know I'm not perfect, but why can't I enjoy pain-free days for more than... what, a few weeks? two months? We're talking 11 years here. Please reveal to me what it is you need me to do and I'll do it.



It was brought to my attention by a doctor friend of mine that steroids can depress the immune system. I mean, I knew that, existentially, but it didn't occur to me while getting these steroid shots into my belly in July. And in the paper that I signed at the Mayo clinic to agree to the possible complications and warnings about the procedure, that factoid wasn't mentioned.

So that may have been how this [still alleged] infection set in. My femur is still hurting all the time, and I need pain meds at night because it gets worse at night.

I saw my infectious disease (ID) doctor today, and I hadn't seen her since spring 2017, when the little hole in my skin graft wouldn't close up. At the time, she gave me oral antibiotics to combat that infection. They didn't work. That is the hole that closed up only months later when I used Manuka honey on it.

She said "so what's been going on since then?"

(thought bubble over my head: oh, nothing, just getting lots of manicures and pedicures with all my luxurious easy days...)

 She concurred that there can be immune challenges after steroid shots. And if, like I suspect, that the infection has been there for a long time (year & a half) and just recently settled in the bone (which isn't a healthy bone to begin with because of the surgeries and arthritis), it may be that the steroids channeled the infection to the weakest point. I don't know.

It leaves the question of if & how to repeat the shots, kind of hanging in the air.
And quality of life questions, but you know that already.

I have an appointment with the pain clinic in Ichilov hospital in Tel Aviv on the 10th to see if they can do these pain shots. I don't know if I'll have an answer from the bone scan yet by then, though.

It will become clear soon, I hope. I now have a bone scan scheduled for Sunday morning (the 7th). The ID doctor wants me to come back with the results a week later. If the results show positive for inflammation/infection, the next step isn't at all fun... a bone biopsy. Now, I was with Sabrina (of blessed memory) when she had a bone biopsy once... you could hear her yelling two hallways away. If I need a bone biopsy, I'm going to call my private orthopedist to do it in a private hospital (yay, auxiliary insurance), and ask for twilight sleep. No way will I go through that awake like I witnessed Sabrina going through. I would need the biopsy to confirm infection, and more specifically which bug. I have so many antibiotic allergies, we'd have to test for a bug to know how to direct the choice of antibiotic. Then, fairly long-term antibiotics. Surgery? Could be. But I can't "go there" with that thought.

I know that a few days ago on the holiday of Simchat Torah, I came to synagogue and danced (with the women) to our whole community singing Torah songs. I danced because last year I was in horrible pain and stuck in bed, and next year Who Knows. So, I danced a few days ago. Only could stand it for about 10 minutes, but I danced. For the Torah, and for Hashem.

1 comment :

  1. This is totally crushing. So sorry. Much love

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